Truvada and Neuropathy

Today's post comes via Bob Leahy, who has featured on this blog before. He is a contributing editor to Positivelite.com, (see link below) a Canadian HIV magazine on-line and has suffered from neuropathy for a long time. His other articles on Positivelight are definitely worth a visit.

There have been various doubts about Truvada (HIV NRTI medication) in the recent past, not least concerning the long term effects on the kidneys but it seems that the drug may also contribute to neuropathic problems. If this is the case, then it joins a growing list of potential medication causes for the disease. Sometimes the science needs to catch up with what's happening on the ground and you won't always be able to rely on drug companies to change their marketing on a highly successful money-spinner. The fact that Truvada is also being suggested as a 'one-a-day' PEP(Post Exposure Prophylaxis) pill, brings all sorts of concerns with it. Kids of twenty who start on something like this and take it every day for ten years or more...I leave you to do the worrying!

Of Truvada, Neuropathy and the state of Health Care in Canada today
by Bob Leahy

Bob Leahy continues the saga of his ouchy feet, with stops on the way for talking about drug regimes. proactive doctors and a report card on how the health care system treats this particular HIVer.

Something very unusual happened to me yesterday. I got a phone call out of the blue from Dr No-Bedside-Manner’s office. (Attentive readers will remember me writing about my experience with Dr NBM here. ) He's my HIV specialist at the Toronto Positive Care Clinic that looks after me.

Actually it was earnest young pharmacist (EYP) placing the call – he works with Dr NBM and had been talking to him - with a suggestion that I drop Truvada from my regime. The reason? It’s potentially contributing to my peripheral neuropathy and also affecting kidney function, according to my blood-work. In fact I have to take THREE drugs to counter side effects of Truvada, which currently brings my HIV arsenal to eight different meds a day. That‘s way too much, in my view.

Anyway, I’ve raised the possibility of dropping Truvada before, but it’s been a no go. Now Dr NBM and EYP seem to have had a change of heart. I’m game of course. Truvada is a drug with an “interesting” profile of side effects, to say the least. I’d say it’s potentially far more troublesome than the oft-quoted villain of the drug cabinet, Sustiva. In any event, I’m happy to flush the things down the toilet – or something. Bye bye Truvada it is.

(Btw, there are blogs/community forums which discuss side effects like this. Here’s one on the Isentress/Truvada combo – I also take Isentress. http://forums.poz.com/index.php?topic=36161.0) These forums may work well for some people but I must confess I don’t use them – I’m just not that obsessive.

In any event, the other part of that morning’s phone discussion with EYP involved my peripheral neuropathy issues. I’ve been on Gabapentin just one week, and EYP wanted to know how I was doing. I really don’t know the answer, but I think it might just be showing some improvement. On the other hand, I’m not immune to the placebo effect. The mind is a curious thing. Check back with me in a month and I’ll tell you better how the Gabapentin is working.

But my feet SHOULD be worse. They had their hardest work-out in months this past weekend. I was in Quebec City with my partner and friends and while we took A LOT of cabs, I still ended up walking about 2 km one day. (I have a post on that trip, btw, with a ton of pics, in the works.) Anyway, my feet were pretty raw after that, and I was literally hobbling by the end, but at least I walked 2 km, which is a MAJOR achievement for me.

Trouble is all that hobbling is hard on the body. Your body compensates and you develop achy legs, achy thighs and in my case a truly achy back. Jeez, if it isn’t one thing it’s another.

But the real point I wanted to make is that, back to Dr NBM and EYP, I was bowled over by how proactive they were in phoning me. I mean that clinic is super busy, and these are two busy guys. Amazing really that I’d get a phone call and with a really consultative approach to my options at that. Score one for the Positive Care Clinic peeps.

You know, people complain about the Canadian Health Service A LOT. Come election time it’s often named as the voting public’s number one issue. But the voting public are more likely than not only casual users of the system. As a HEAVY user of the system ever since I was diagnosed eighteen years ago, I’ve seen some amazing things happen. Overall, I’d rate the service one gets quite highly. I once, for instance, went to our local hospital emergency when I had fallen flat on my back on ice. I could hardly move. But I was immediately booked in, went through triage, consultation with a doctor, X-ray and another review with the doctor, this time with X-ray results, all in the space of one hour. True, that’s the exception rather than the rule, but we seldom hear stories like this, and I think our health service get an unnecessarily bad rap. There are so many good people working for us there. In the case of HIV care, even from the publicly financed Catholic hospital I go to (don't ask) my care for the most part has ben respectful, expert and pretty exemplary in every way. I mean they've kept me alive, for starters. My GP, a woman doctor I've dealt with for years now, is an angel too. I’d be interested what other heavy consumers think of the care they receive, though.

So those are the latest developments. Will my feet continue to hurt? What impact will dropping Truvada have. What will Oprah do next? I’ve considered doing regular posts on these topics, my experience with peripheral neuropathy in particular because it’s so common in HIVers, and many who are not experiencing symptoms yet may well do so in time. Plus it’s kind of challenging to treat, and sharing may help. That kind of ongoing coverage sounds like the kind of thing I myself would like to read but could also be seen as incredibly self indulgent. Something to think about, eh?

http://positivelite.com/content/news/health/item/of-truvada-neuropathy-and-the-state-of-health-care-in-canada-today